First Dunkirk ALS walk on Saturday morning

July 17, 2013

Look around, someone you know may be affected by ALS. A friend, former classmate, or family member may have ALS themselves or have had the disease change the life of a loved one.

The disease, amyotrophic lateral sclerosis, came to the forefront with the retirement announcement by then New York Yankee great Lou Gehrig in 1939. Gehrig told a Yankee Stadium crowd he was retiring due to the disease which eventually came to bear his name. Gehrig died in 1941.

According to the ALS Association website, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

Research on the disease has yielded little progress in finding either a cause or a cure. While the effort to find those answers goes on, taking care of those afflicted with the disease is a cause for the ALS Association. To help with its efforts, supporters in various communities have organized fundraising events. On Saturday, Dunkirk will host a Walk to Defeat ALS at Point Gratiot.

Retired Dunkirk Recreation Director Bob Patterson, along with a committee of other volunteers, is organizing the walk. Patterson said he decided to get a local walk going after taking part in a walk in Buffalo last year.

"It's one of those situations where I looked around and said we can do this. If there was a year we were going to do it it was going to be this year," Patterson explained.

Patterson said he walked with a team in support of Tom Everett, a Fredonia native who moved back to the area after finishing a teaching career in Connecticut.

"I sat down with Tom and Diane (Everett) a few months ago and said I'm willing to go forward with this if you guys want to," Patterson said.

There are others in the area who are battling ALS. Retired Fredonia police officer Dave Holland is one, city resident Genevieve M. Katta, a mother of four, is another.

Holland was diagnosed after he suddenly had trouble carrying boxes of food into a Forestville food pantry he supported. The 87-year-old Katta was diagnosed after a series of medical incidents that just seemed to be part of growing older.

"Part of our discussion was how devastating this is to local families. It's usually about $40,000 to outfit a van; buy a van and get the lifts and everything in it," Patterson stated, adding making a house handicapped accessible is also part of the process. That process can drain a person's life savings and retirement money.

"Billy Mead is the other reason I'm in it because I saw the three years of the Billy Mead run when the Reeds ran it," he explained.

Patterson recounted a teacher classmate, Gloria Bielec Szwejbka, who came down with ALS and lost her ability to speak or eat.

"It's pretty wicked stuff. There is no cure, there is no comeback. There is no going into remission," he added. "They can't find the combination. ... The stories are different, every patient is different. What happens that causes them to go to the doctor can be different."

Patterson recounted a conversation he had with Tom Everett, who played with Billy Mead for the Cavemen, a '60s-era local band.

"He said what are the odds about one band, four people, two of them coming down with ALS because it's so scattered. That's almost impossible to comprehend," Patterson said. "I never really had anything to do with ALS in all my world until Billy Mead. Obviously, we grew up knowing Lou Gehrig made it famous. ... I run into it more and more now. When you bring it up, the stories start. My uncle, second cousin, brother, somebody, had it. I think maybe because it's so devastating a lot of people don't run around talking about it."

Registration begins at 9 a.m. at Point Gratiot with the walk scheduled to start at 10 a.m. The $15 walker registration may be made the day of the event. The 1-mile route begins at the old tennis courts, continues on the new bike path to Oak Street, where a right hand turn will lead into the Point and the finish.

"We're having food at 11 a.m. and then in the late afternoon we're going for a social event to Coughlans," Patterson stated. "There's a bunch of old Fredonia, Mindszenty, Dunkirk graduates coming in. It's kind of neat from our era."

Tim Hortons will provide coffee and donuts, Pizza Village is donating pizza and the Boys and Girls Club will be manning a kids' tent.

"People can bring their kids and have them entertained and leave them while they walk if they want to," Patterson added. "Kids under 10 walk for free with the adults in their lives. Face painting and games will be available.

The large shelter at the Point, along with three other tents, will be available for protection from the elements.